The reporters' agreement in assessing the quality of life of young people with intellectual disabilities.
Always collect both self and proxy QoL reports for transition-age students with ID—youth rate self-determination higher, relatives rate rights and wellbeing higher.
01Research in Context
What this study did
Berástegui et al. (2021) asked 58 transition-age students with intellectual disability to rate their own quality of life. At the same time, parents and teachers filled out the same questionnaire about the student.
The team compared the three sets of answers across eight life areas, like self-determination, social inclusion, and physical well-being.
What they found
The match between self-ratings and proxy-ratings was poor. Youth scored themselves higher on self-determination; parents and teachers scored the youth higher on rights and emotional well-being.
Overall, the average scores were close, but the stories each reporter told were different.
How this fits with other research
Libero et al. (2016) saw the same age group and found parents already rated well-being below normal. Ana’s work shows those parent scores may miss how the youth actually feel.
Symons et al. (2005) found objective living conditions and personal satisfaction did not line up in adults with ID. Ana’s study extends that mismatch to young adults and shows it also happens between self and proxy views.
Gardner et al. (2009) documented that teachers and parents disagreed on self-determination skills. Ana confirms the disagreement and shows the youth themselves add a third, higher view of their own autonomy.
Why it matters
If you only collect parent or teacher QoL data, you risk under-counting self-determination and over-counting rights concerns. Gather both self and proxy forms before writing transition goals. When scores diverge, treat the gap as information, not error, and plan interventions around the student’s own priorities.
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02At a glance
03Original abstract
A good evaluation of the quality of life (QoL) of young people with disability is essential to detect, monitor and report their support needs in research, and individual, institutional and policy planning. The aim of this study is to evaluate the reporters' agreement in the assessment of the QoL of young people with Intellectual Disabilities in transition to adulthood. Self and proxy-report version of INICO-FEAPS quality of life scale was used to assess 119 students of a post-compulsory educational program, being the proxy-report informed by one of their relatives. Results show poor intraclass correlations between informants. No discrepancies were found in the global QoL. However, small discrepancies were found for some dimensions. Young people's reports were higher for self-determination, personal development and interpersonal relationships. On the contrary, relatives' reports were higher for rights, material and physical wellbeing. The discrepancies in global QoL assessment were not related to student's severity, IQ, diagnosis or parent's gender. These findings underline the importance of young people's participation in the assessment of their QoL as well as the convenience of using both kind of informants when taking appropriate decisions in educational contexts during transition to adulthood.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.104026